IBD by Association

I am very aware just how transparent my digital identity is; I have consciously chosen to share (an embarrassing amount of) pictures and thoughts about education, Crohn’s and photography. I try not to share too much else, if I can help it (but I share more than I probably should).

I have met people online who, like me, have been diagnosed with Inflammatory Bowel Disease (IBD). Now, I meet these people in well-populated social networks be it Facebook, Instagram or Twitter. One thing that I am extremely aware of is that these conversations are stored onto servers and owned by companies (whose privacy policies change so often, who really knows who has your data anymore). Now, had I met these people face to face, our words would disappear at the end of every sentence. These conversations are ephemeral and I don’t have to worry that these conversations will be scraped and sold to a pharmaceutical company.

Having IBD is part of my online social identity and I have come to terms with that, but when there is a social media campaign to increase awareness of IBD and I ask my friends to support the cause and they do, consequently they are now associated with a condition they do not have. One of my friends has been getting followers and comments since the campaign and is being pulled into the network. One singular association with the disease and it has been engraved on his online social identity.

Put it this way, if he had bought a ribbon and pinned it onto his jacket, no passer-by would think that he has an illness. Much like how people who wear red ribbons on 1st December aren’t labelled as having HIV/AIDS. In the real world, we have a social understanding that these are gestures of support. So to what extent can we protect ouronline lifestyles but yet still show support and compassion for our friends? Is a ‘like’ really enough? When we are trying to raise awareness and call people to action online, we rely on the post and the share.

There are just some social behaviours which don’t quite translate online; our actions in virtual worlds have a more permanent effect, our posts are written into code and branded onto our profiles (whether we can see them or not). It’s almost like having henna on holiday- you and your friends had a great time, but you get home and you realise that it is dodgy black henna.It scars and it fades, slowly, but it is still there.